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Consultation of parents in actual end-of-life decision-making in neonates and infants

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Abstract

The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.

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Abbreviations

ELD:

End-of-life decision with a possible or certain life-shortening effect

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Acknowledgements

This study was supported by grants from the Research Council (OZR) and the Cultural Support Fund of the Vrije Universiteit Brussel (VUB). The clinical patient data were supplied by the Preventive and Social Health Care Division of the Ministry of Flanders’ registry of births and deaths, and by the Flemish Center for Study of Perinatal Epidemiology (SPE). We are indebted to the Belgian Society of Pediatrics and to all departments of neonatal intensive care in Flanders for their cooperation in the study. We thank Johan Vanoverloop for advice on statistical issues. We would also like to thank Avram Benatar for contributing to the categorization of clinical variables and Jan Bernheim for advice on the discussion section.

Role of the funding source

Both funding sources supported the study after approval of the study design that was proposed by the researchers. They had no role in data collection, data analysis, data interpretation, or writing of the report.

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Authors and Affiliations

  1. End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium

    Veerle Provoost, Reginald Deschepper, Johan Bilsen & Luc Deliens

  2. Department of Pediatrics, Vrije Universiteit Brussel, Academisch Ziekenhuis, Brussels, Belgium

    Filip Cools, Peter Deconinck, José Ramet & Yvan Vandenplas

  3. Center of Bioethics, Ghent University, Ghent, Belgium

    Freddy Mortier

  4. Department of Paediatrics, Academisch Ziekenhuis Vrije Universiteit Brussel, Laarbeeklaan 101, 1090, Brussels, Belgium

    Yvan Vandenplas

Authors
  1. Veerle Provoost
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  2. Filip Cools
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  3. Peter Deconinck
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  4. José Ramet
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  5. Reginald Deschepper
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  6. Johan Bilsen
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  7. Freddy Mortier
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  8. Yvan Vandenplas
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  9. Luc Deliens
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Corresponding author

Correspondence to Yvan Vandenplas.

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Provoost, V., Cools, F., Deconinck, P. et al. Consultation of parents in actual end-of-life decision-making in neonates and infants. Eur J Pediatr 165, 859–866 (2006). https://doi.org/10.1007/s00431-006-0190-4

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  • DOI: https://doi.org/10.1007/s00431-006-0190-4

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